Help Elaine Live!
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Hey! So, most of you know my mom, Elaine, has recently started having seizures out of nowhere. We have been in & out of the ER / Hospitals / Rehab since 11/20/23. My mom is currently getting Medicare disability, but they stated she does not qualify for medicaid. I am writing this today to see if we can raise enough money for a medication to help control her seizures.
The medication is called Briviact and it is about $487 for 30 days out of pocket. There is no generic for this medication and they have like a 20 year patent is what I was told ( I did not fact check that.)
I am trying to get about 3 months of this medication filled so we can apply for the patient assistance program to get it free or at a reduced cost. (She does not qualify for the manufacturer coupon since she is on medicare.) I am also going to attempt to raise a little bit of money to buy a new bed for her to make it easier for her to get in and out of and some household equipment to make it easier for her to do daily tasks & anytbjnf extra will go towards her hospital bills bc they are starting to roll in from her January visit to Baptist East.
Currently she is in a wheelchair, & dependent on oxygen… we are hoping she will start walking soon.
Please keep reading if you'd like, I'll go through the entire story.
11/20/23 Me & My mom had gone out to lunch. It was a normal day? She was feeling fine. She wasn't complaining about not feeling well or anything. When we got back I started unloading the car of things that I had gotten at sams club for her (cases of water, tp, ya know.. the kinds of things that make having a sams card worth having a sams card.) She was standing in front of the sink resting on her elbows. I was talking to her and she was just staring at me, not saying a word. I keep talking and then I'm like hello?? She starts looking up at the lights and then starts spinning in circles... I run around the island to her and grab her arms and I can see her face twitching. She then collapses to the ground and goes into a full grand mal seizure. I call 911, because I've never seen her have a seizure before. I assumed her sodium had dropped again since it had only been a few months since she was in/out of the hospital for that. The EMT's got there, they did a BG, ekg, etc – my mom was coming around... the EMT helped her get up.. she didn't want to ride in the ambulance to the hospital so I took her to Baptist Tipton ER. She got a CT Scan, an MRI, bloodwork etc. They stated everything was normal and told us to follow up with a neurologist.
About 2 weeks later we follow up with Dr. Saeed in Bartlett. He prescribes a routine dose of Keppra XR 500mg to take every 12 hours. He asked her to get off of her mood stabilizer (Wellbutrin) as it can cause seizures. Mom said she didn't like the way the keppra made her feel, but I insisted that she continue taking it.
She followed up with her psychiatrist who stated she didn't feel like the wellbutrin was the culprit and would like her to continue taking it.
About 2 weeks after that her right arm starts twitching. Kind of looks like a muscle spasm. It happens several times a day and lasts about 45-60 seconds. We get an EEG @ Dr. Saeed clinic & schedule a follow up on January 8th. The spasm ends up progressing into a full shoulder jerk towards the end of December. We go back to the ER at baptist tipton and they do another CT, bloodwork, etc. Everything is normal. They give her a magnesium infusion & tell me to have her worked up for parkinsons...
Dr. Saeed’s office calls and reschedules January 8th re check due to an emergency.
Middle of January her entire right side starts going numb, the muscle/shoulder jerking continues. She calls 911 and they rush her to Baptist East for stroke like symptoms. They do another CT/ MRI, EEG, more bloodwork etc. Everything is once again... “normal” she stays for a week while they monitor her. & increase her keppra to 750mg twice a day & start clonazepam for the shoulder jerking & they stop her wellbutrin.
She gets home, we follow up with Dr. Saeed and he says the shoulder jerking is a myoclonic seizure. Increases her keppra once again to 1000mg twice a day. She still has a few weeks left of the 750mg and we discuss saving about a weeks worth of that bc Dr. Saeed wanted to do a video EEG and needed her on the lowest dose of medication we had left for the EEG. Her psychiatrist decides not to put her on anything else for mood / depression / etc at this time until we figure out what is causing the seizures.
Everything is relatively normal for a few weeks... and then she runs out of 750mg and increases to 1000mg Keppra. She starts getting extremely agitated, paranoid, she starts talking to people that aren't there (including dead people), she keeps telling me the devil is coming to get her.. I take off work and take her to the ER on a Friday to make sure she doesn't have a UTI or Hypoxia (as she has COPD) – they do another CT/MRI/ UA/ BW/ Blood Gas test & they said everything was pretty normal. They said her magnesium was a little bit low, but nothing major. They tell me to have a dementia work up done and discharge us.
I spend the weekend with her trying to figure out what I'm going to do, as we do not live together & I have dogs at my house Saturday night I leave for a little bit to go let my dogs out and when I get back she says “I was going to kill myself, but I forgot how to”... I asked her if she wanted to go to lakeside and she said yes. So, Sunday we went and checked into lakeside. She was there for 10 days and I can't say 1 good thing about it. The psychiatrist overseeing her was MORE concerned about a 10mg thc edible than her extremely altered mental status. He literally signed her up for drug classes to take outside of Lakeside... Anyway, while she was there I had them wean her off of the Keppra to see if that made any change to her mentation, bc I literally am out of ideas and options. They take her off the Keppra slowly and put her on Lamictal. She is also started on Cymbalta for depression/mood. I was told she would be staying an additional 10-14 days doing some limited in patient program where she would stay in a dorm & go to classes between 9-3. Great! Whatever she needed to do. Except for some reason they didn't do that? A nurse called me Wednesday while I was at work and told me she was being discharged and I needed to come get her.
I went after work to pick her up, the entire time we were going home she said she felt like she was being kidnapped. I re assured her multiple times that I was not kidnapping her and even showed her the GPS with her address plugged in so she knew I was taking her home. We get home and she asks me to take a shower, so I am helping her get ready for the shower and noticed they had her in a diaper? I asked why she was wearing a diaper and she said bc she has been peeing on herself. I asked why she was peeing on herself and she said she didn't know. She sat down in a chair next to the bathroom and started peeing in it like she was sitting on a toilet. I asked her what she was doing and she replied that she didn't know.. I had to call into work Thursday and Friday that week bc I didn't know what else to do. She could not be alone.. that Thursday was terrible. She kept going in and out of a catatonic state. She would be verbal and then completely “lights on nobody home” - her eyes would be open but she wouldn't talk, wouldn't respond, etc. She kept urinating on herself. I'd wake up and check on her and she would be just sitting in the dark. No TV, no lights, just sitting.. unresponsive.
That Friday I took her to methodist university hospital. They put us in a room immediately after triaging her. They did a CT scan & said there is definitely something going on. Waited 10 hours for them to come get her for an MRI and the nurse told me to just go home, that she was like 5th in line and it would be a while. It was 3am. The next day they had her moved to a room, which is where she stayed for over a month. Initially they had her on vancomycin, thiamine, acyclovir, ampicillin, & something else to rule out viral/infectious disease going on in her brain.
They said she had several lesions and 4 spots of swelling in her frontal lobe. After about a week and a half of these medications she was doing so much better. She was walking, talking, texting etc... then they put her back on Keppra. She immediately started getting agitated and paranoid again. She kept saying I was lying to her & being combative. Her texts were weird again and she kept telling me she was dying. I asked the nurse to see if they could switch her off Keppra onto something else bc she doesn't have a good reaction to keppra & she texted the neurologist immediately and they said yes they could change her meds. My mom cried and told me she didn't want me to leave that night, & I told her I couldn't stay all night bc I had dogs at home. I stayed as long as I could. The next am around 9am apparently she refused her meds.. and ended up having a seizure they couldn't bring her out of. They finally got her sedated & ended up moving her to ICU to put her in a medically induced coma on a ventilator for a few days to give her brain time to calm down. When they woke her up she was super confused (which I guess is to be expected) – she asked the same question over and over... and over. The next day it was even worse. She was extremely aggressive, yelling, screaming, cussing, saying we were killing her. She even bit me... they got her off the IV keppra and onto oral Briviact.
She moved out of the ICU back up to a regular floor. She was doing SO MUCH BETTER on the Briviact. She was walking, talking, texting. Getting up and using the toilet. Etc. Then the pharmacist called and said that they were getting ready to discharge her to rehab and that rehab doesn't carry Briviact and we would have to pay out of pocket for it. I guess with her medicare it would bring the medication down to around $500... I didn't have $500, she doesn't have $500. I told the pharmacist we can't do that. The pharmacist then stated that she can't go to rehab then. I told her that I guess she would have to stay at the hospital until they found her a different medication. I regret that part so much now... they put her on a few different inexpensive medications.
She is SO heavily drugged now.
She got moved to rehab & now they have her in a wheelchair. She doesn't remember anything, she's super combative and aggressive. The nurse called me today to tell me she's yelling, cussing, & tried to kick her. I don't know what to do at this point. No one is going to want to help me take care of her if she's acting like that. I live 45 minutes away and was truly hoping that she would be able to function on her own w/ slight adjustments (we got wifi cameras to put in the house to check in to make sure she hasn't fallen, we're going to get an apple watch w/ fall detection etc.) I am hoping we can crowd fund enough money to get her the things she needs to make her life a little easier & the medication that she was doing well on until we get approved for the patient assistance.
If you made it this far, thank you for reading. If you have any questions or suggestions I’m all ears. Image
I am trying to get about 3 months of this medication filled so we can apply for the patient assistance program to get it free or at a reduced cost. (She does not qualify for the manufacturer coupon since she is on medicare.) I am also going to attempt to raise a little bit of money to buy a new bed for her to make it easier for her to get in and out of and some household equipment to make it easier for her to do daily tasks & anytbjnf extra will go towards her hospital bills bc they are starting to roll in from her January visit to Baptist East.
Currently she is in a wheelchair, & dependent on oxygen… we are hoping she will start walking soon.
Please keep reading if you'd like, I'll go through the entire story.
11/20/23 Me & My mom had gone out to lunch. It was a normal day? She was feeling fine. She wasn't complaining about not feeling well or anything. When we got back I started unloading the car of things that I had gotten at sams club for her (cases of water, tp, ya know.. the kinds of things that make having a sams card worth having a sams card.) She was standing in front of the sink resting on her elbows. I was talking to her and she was just staring at me, not saying a word. I keep talking and then I'm like hello?? She starts looking up at the lights and then starts spinning in circles... I run around the island to her and grab her arms and I can see her face twitching. She then collapses to the ground and goes into a full grand mal seizure. I call 911, because I've never seen her have a seizure before. I assumed her sodium had dropped again since it had only been a few months since she was in/out of the hospital for that. The EMT's got there, they did a BG, ekg, etc – my mom was coming around... the EMT helped her get up.. she didn't want to ride in the ambulance to the hospital so I took her to Baptist Tipton ER. She got a CT Scan, an MRI, bloodwork etc. They stated everything was normal and told us to follow up with a neurologist.
About 2 weeks later we follow up with Dr. Saeed in Bartlett. He prescribes a routine dose of Keppra XR 500mg to take every 12 hours. He asked her to get off of her mood stabilizer (Wellbutrin) as it can cause seizures. Mom said she didn't like the way the keppra made her feel, but I insisted that she continue taking it.
She followed up with her psychiatrist who stated she didn't feel like the wellbutrin was the culprit and would like her to continue taking it.
About 2 weeks after that her right arm starts twitching. Kind of looks like a muscle spasm. It happens several times a day and lasts about 45-60 seconds. We get an EEG @ Dr. Saeed clinic & schedule a follow up on January 8th. The spasm ends up progressing into a full shoulder jerk towards the end of December. We go back to the ER at baptist tipton and they do another CT, bloodwork, etc. Everything is normal. They give her a magnesium infusion & tell me to have her worked up for parkinsons...
Dr. Saeed’s office calls and reschedules January 8th re check due to an emergency.
Middle of January her entire right side starts going numb, the muscle/shoulder jerking continues. She calls 911 and they rush her to Baptist East for stroke like symptoms. They do another CT/ MRI, EEG, more bloodwork etc. Everything is once again... “normal” she stays for a week while they monitor her. & increase her keppra to 750mg twice a day & start clonazepam for the shoulder jerking & they stop her wellbutrin.
She gets home, we follow up with Dr. Saeed and he says the shoulder jerking is a myoclonic seizure. Increases her keppra once again to 1000mg twice a day. She still has a few weeks left of the 750mg and we discuss saving about a weeks worth of that bc Dr. Saeed wanted to do a video EEG and needed her on the lowest dose of medication we had left for the EEG. Her psychiatrist decides not to put her on anything else for mood / depression / etc at this time until we figure out what is causing the seizures.
Everything is relatively normal for a few weeks... and then she runs out of 750mg and increases to 1000mg Keppra. She starts getting extremely agitated, paranoid, she starts talking to people that aren't there (including dead people), she keeps telling me the devil is coming to get her.. I take off work and take her to the ER on a Friday to make sure she doesn't have a UTI or Hypoxia (as she has COPD) – they do another CT/MRI/ UA/ BW/ Blood Gas test & they said everything was pretty normal. They said her magnesium was a little bit low, but nothing major. They tell me to have a dementia work up done and discharge us.
I spend the weekend with her trying to figure out what I'm going to do, as we do not live together & I have dogs at my house Saturday night I leave for a little bit to go let my dogs out and when I get back she says “I was going to kill myself, but I forgot how to”... I asked her if she wanted to go to lakeside and she said yes. So, Sunday we went and checked into lakeside. She was there for 10 days and I can't say 1 good thing about it. The psychiatrist overseeing her was MORE concerned about a 10mg thc edible than her extremely altered mental status. He literally signed her up for drug classes to take outside of Lakeside... Anyway, while she was there I had them wean her off of the Keppra to see if that made any change to her mentation, bc I literally am out of ideas and options. They take her off the Keppra slowly and put her on Lamictal. She is also started on Cymbalta for depression/mood. I was told she would be staying an additional 10-14 days doing some limited in patient program where she would stay in a dorm & go to classes between 9-3. Great! Whatever she needed to do. Except for some reason they didn't do that? A nurse called me Wednesday while I was at work and told me she was being discharged and I needed to come get her.
I went after work to pick her up, the entire time we were going home she said she felt like she was being kidnapped. I re assured her multiple times that I was not kidnapping her and even showed her the GPS with her address plugged in so she knew I was taking her home. We get home and she asks me to take a shower, so I am helping her get ready for the shower and noticed they had her in a diaper? I asked why she was wearing a diaper and she said bc she has been peeing on herself. I asked why she was peeing on herself and she said she didn't know. She sat down in a chair next to the bathroom and started peeing in it like she was sitting on a toilet. I asked her what she was doing and she replied that she didn't know.. I had to call into work Thursday and Friday that week bc I didn't know what else to do. She could not be alone.. that Thursday was terrible. She kept going in and out of a catatonic state. She would be verbal and then completely “lights on nobody home” - her eyes would be open but she wouldn't talk, wouldn't respond, etc. She kept urinating on herself. I'd wake up and check on her and she would be just sitting in the dark. No TV, no lights, just sitting.. unresponsive.
That Friday I took her to methodist university hospital. They put us in a room immediately after triaging her. They did a CT scan & said there is definitely something going on. Waited 10 hours for them to come get her for an MRI and the nurse told me to just go home, that she was like 5th in line and it would be a while. It was 3am. The next day they had her moved to a room, which is where she stayed for over a month. Initially they had her on vancomycin, thiamine, acyclovir, ampicillin, & something else to rule out viral/infectious disease going on in her brain.
They said she had several lesions and 4 spots of swelling in her frontal lobe. After about a week and a half of these medications she was doing so much better. She was walking, talking, texting etc... then they put her back on Keppra. She immediately started getting agitated and paranoid again. She kept saying I was lying to her & being combative. Her texts were weird again and she kept telling me she was dying. I asked the nurse to see if they could switch her off Keppra onto something else bc she doesn't have a good reaction to keppra & she texted the neurologist immediately and they said yes they could change her meds. My mom cried and told me she didn't want me to leave that night, & I told her I couldn't stay all night bc I had dogs at home. I stayed as long as I could. The next am around 9am apparently she refused her meds.. and ended up having a seizure they couldn't bring her out of. They finally got her sedated & ended up moving her to ICU to put her in a medically induced coma on a ventilator for a few days to give her brain time to calm down. When they woke her up she was super confused (which I guess is to be expected) – she asked the same question over and over... and over. The next day it was even worse. She was extremely aggressive, yelling, screaming, cussing, saying we were killing her. She even bit me... they got her off the IV keppra and onto oral Briviact.
She moved out of the ICU back up to a regular floor. She was doing SO MUCH BETTER on the Briviact. She was walking, talking, texting. Getting up and using the toilet. Etc. Then the pharmacist called and said that they were getting ready to discharge her to rehab and that rehab doesn't carry Briviact and we would have to pay out of pocket for it. I guess with her medicare it would bring the medication down to around $500... I didn't have $500, she doesn't have $500. I told the pharmacist we can't do that. The pharmacist then stated that she can't go to rehab then. I told her that I guess she would have to stay at the hospital until they found her a different medication. I regret that part so much now... they put her on a few different inexpensive medications.
She is SO heavily drugged now.
She got moved to rehab & now they have her in a wheelchair. She doesn't remember anything, she's super combative and aggressive. The nurse called me today to tell me she's yelling, cussing, & tried to kick her. I don't know what to do at this point. No one is going to want to help me take care of her if she's acting like that. I live 45 minutes away and was truly hoping that she would be able to function on her own w/ slight adjustments (we got wifi cameras to put in the house to check in to make sure she hasn't fallen, we're going to get an apple watch w/ fall detection etc.) I am hoping we can crowd fund enough money to get her the things she needs to make her life a little easier & the medication that she was doing well on until we get approved for the patient assistance.
If you made it this far, thank you for reading. If you have any questions or suggestions I’m all ears. Image
Organizer
Amanda Noggle
Organizer
Munford, TN